National Cerebral Palsy Awareness Day (US)

March is National Cerebral Palsy Awareness Month and today is National CP Awareness Day in the US.

Why is this important?

This is the only “official” Cerebral Palsy Awareness Day as designated by the U.S. Congress. Over 800,000 Americans, and over 17,000,000 million people worldwide are impacted by Cerebral Palsy, the most common motor disability in children. source

Reaching for the Stars goes on to discuss the ‘shame-worthy’ lack of research, awareness, and funding for cerebral palsy. It also highlights the lack of parents out there demanding more. More research, more awareness, and more funding. I’m not sure I can agree with this as I have met so many families who are raising awareness, raising funds for and demanding research. Once such organization is Three to Be, which holds several fundraisers and events each year to raise awareness and funds towards research for studies on stem cell therapy as well as a clinical trial with a Locomot. Three to Be was founded by a couple raising triplets with cerebral palsy.

When Sebastian was born, the doctors said he might have cerebral palsy. I imagined a child in a wheelchair who couldn’t do anything independently. And I cried. I felt a cloud of darkness surround me. I felt like I was falling into a great abyss. Ali and I held each other and we cried. We didn’t know what cerebral palsy meant. I remember traveling to Switzerland when Sebastian was 3 months old. We passed a couple with two teens in wheelchairs in the Zurich Airport. Ali and I looked at each other but said nothing. I know we were both thinking, ‘will that be our son?’ And you know what? Our son does use a wheelchair. He cannot do most things independently.

He also uses a walker. And rides a bike. He can play soccer in his walker and lead his classroom down the hallway. He can race his peers on the playground. Sometimes his wheelchair – or as we refer it – the Red Racer, is the ‘car’ leading others on the playground into new adventures. Sebastian does have cerebral palsy but it doesn’t define who he is. We live our lives helping him do the same things – and sometimes more – than his peers do. He loves swimming and riding his therapy horse, Oreo. He enjoys going to museums and art galleries. He likes to go high on the swings and splashing/doing ‘blast offs’ in the bathtub.

We know that he can do most things with a little bit and sometimes a lot of help. But others don’t know that. Sometimes they see a wheelchair and smile in pity or look on in sadness. They don’t know how happy he is and how much he enjoys being around his cousins in Michigan or his friends at school. They don’t know how hard he laughs at Elephant and Piggie or The Pigeon in Mo Willems books, because he gets all the jokes. They don’t know that he has a little sister whom he is teaching and learning from every day. Sometimes, they don’t know he understands their words and can also communicate in his own way. Sebastian engages in the world around him, whole heartedly.

We were at our favorite cafe on Sunday and a couple came to sit at the table next to ours. Sebastian looked up at the young woman and just smiled at her. She smiled right back and said hello. He started at her for a moment and then was ready for more snack. He is a friendly kid. The woman who owns the cafe with her brother always comes over to talk to him. And she gets it. Without even asking, she knows that his smile means yes. And she engages in short chit chat with him. We do not stay at home. We get out into the community. Sebastian is a part of that community. It is important for me that we live in a community where people speak to my son and see him and not his Red Racer.

And that is why National CP Awareness Month/Day is important. When someone gets a diagnosis for their child of cerebral palsy, I don’t want them to fall into a black abyss. I want them to remember that little boy they saw walking in his walker down the street that flashed them the biggest, friendliest smile they’ve seen all week. I want them to know that there are families out there to connect with for information and support. I want them to know that they can be happy.

Do I want there to be more research and funding for cerebral palsy too? Of course. I want to know if stem cells are safe for my son’s brain. I want to know if a robotic walking machine can help my son become more of an independent walker. But I also want there to be more education for teachers so they can learn how to integrate kids like mine into a regular classroom. I want my son to have the same opportunities as yours. And I want our kids to be able to play together. I want visibility brought to disability because I don’t want you to stare or have pity. I want you to know and feel comfortable around my kid.

Each vote is $1 donated to Holland Bloorview by Cisco. The Cisco Visibility Awards are 1st prize $1000, 2nd prize $700, and 3rd prize $300. Winning one of these prizes will help us pay for a special music class/lesson which uses technology that allows Sebastian to use his eyes and other simple body movement to create music and art. [The VMI is music software developed at Holland Bloorview. The program allows musicians to see themselves on a screen, draw colourful shapes around their reflection and assign instruments to each shape. When the musician moves through the shapes, music is produced!]

3 thoughts on “National Cerebral Palsy Awareness Day (US)”

I love this! I feel the same way. The hardest part about my job somedays is explianing what I see about my many clients who have CP (in many different forms). I always see a kid, who wants to have a good time, and be a kid. I have some of the best stories and they almost always involve supporting someone. Some adventures only happen when things aren’t as planned.

Some other great things about Seb. He is quite opinionated, he’ll start a small argument with me for fun, he loves his family A LOT and shares my sense of humor, which serves for quite a few laughs when were together. Even when I first met him, the child inside spoke louder than his red racer, stroller or walker. He is heart is bigger than all those things.